Yippee, Emily is 3!!

Our beautiful baby girl is three years old today!!! It has been an amazing journey, and we have learned so much about life. What's important, what is not. Who we are, who we aren't. What we can do, what we can't. What we can dream, what we can accomplish. What we love, what we need to love. Who God is, who He's not. What is love...baby don't hurt me, don't hurt me... no more.... uh - sorry. We have learned about love, though, what it is and what's it's not.

Emily's life, with God's perfect purpose, teaches us more than we can ever imagine. She is the center of our lives, which keeps us from centering our lives on trivial things. She teaches Annabelle to love, when a smile is all she can give in return. She defines Diana's purpose, and clings to mommy's love. She shows her A-yee (aunt Cindy) that she loves and trusts her every move, completely. She teaches me that NOTHING in this world matters more than what God has given us - and nothing is more important than providing for the lives He has given to me.

I made a video for Emily's special day... bear with me, it is long. Get some popcorn or something b/c it's 9 minutes. I know, just watch it. ;) I have to admit, I choked myself up with this montage - Emily's life has so much more meaning that I could ever attempt to portray through the internet... (if you can't view the video below here is an alternate link)

Emily's life events (I'll add more as I remember them):
  • July 15, 2005 :: Emily Hope Lee is born in Baltimore, MD - happy and strong - blood was drawn to test for Spinal Muscular Atrophy (SMA).
  • 4 weeks :: Johns Hopkins Hospital tells us that "Emily is fine - no SMA." We learn they did the wrong test.
  • 5 weeks :: Emily is diagnosed with SMA, Type I. The same disease that took the life of our second daughter, Linnea.
  • 7 weeks :: Our first visit to Primary Children's Hospital, Salt Lake City, to take part in Dr. Swoboda's clinical study for Sodium Phenyl Buterate. Visits continue for 1 year.
  • 4 months :: Laproscopic surgery for G-tube (feeding tube) and Nissan fundoplication at CHOP.
  • 9 months Emily begins g-tube feeds only :: swallow is lost.
  • 16 months :: First major sickness caused right lung to collapse - intubated at Johns Hopkins University Hospital. Major arguments with doctors and nurses about Emily's care, but we all survive. Emily lost a lot of weight and strength though.
  • 24 months :: 2nd B'day party. BIG bash - 100+ people!
  • 29 months :: next major hospitalization :: RSV :: almost lose Emily twice. More major arguments with Hopkins staff - after failed extubation we planned for air transport to Madison, WI. Reasonable doctors came on shift and we agreed on an extubation plan. It worked!! I hope the doctors were taking notes, and that they all learned some things from us that month.


Happy 3rd Birthday Emily!
Anonymous said…
happy THIRD birthday big girl! So sorry we missed it! Love the Sykora Family
Nancy Lee said…
Oh! The video is so beautiful! Thanks for making it Nathan, so we could all celebrate with you!

Happy Birthday, Emily!
Good mothering, Diana!
I love you, Annabelle!
Dawn and D.J. said…
Happy birthday, Emily! We can't wait to celebrate this weekend with you!
Anonymous said…
Happy birthday, Emily...happy day for all the Lee's!
Pam, Chris, Meredith & Andrea Sikora
Aiden's mommy said…
Happy Birthday Emily! Have a wonderful day filled butterfly kisses and teddy bear hugs!
Biggie Birthday hugs,
Dawn and Aiden
CureSMA4Stella said…
Happy Birthday big girl and praying for many more for you!!! Oh that is just a wonderful tribute! I loved it, loved it, loved it!!!! Beautiful music and pictures. You guys are just such a terrific family and we REALLY want to meet you sometime! Thanks for all the guidance you gave us from the very start when we first encountered SMA!! Sorry we missed you when you were in Iowa, Nate!
Hugs from Iowa,
Sarah and Stella and family
princessmadiro said…
HAPPY BIRTHDAY EMILY from one princess to another!
Sky said…
what a wonderful Birthday montage of Emily and your family. She is amazing and so are you guys! God gives us such precious gifts, Hugs and Kiss her From Sky and I on her special day!!!! Happy 3rd Birthday Emily!!!! Sheila and Sky
Unknown said…

shēngrì kuàilè

We wish you continued health now and always. We are thinking of you and your family on this momentous occasion!!!!

Shira says, "Gidyup"
Happy 3rd Birthday Emily!! You are beautiful! I wish we didn't live so far away now and we could celebrate this day with you in person, but we are celebrating this momentous occasion together in spirit none the less.

Nathan, the video is amazing, though it could never come close to fully capturing all of the blessings Emily has brought to all of us! I cried, I laughed, I smiled- thank you for making it and sharing it with everyone. I love to see the pictures and video clips of all of you! It is amazing how much change and growth happens in 2 years. If you are ever anywhere even remotely near here, please let us know so we can come see you if you can't come see us!

We love you all!! WE miss you!!

love, Emman, Jade, Caleb and Savanna Zoe
Lindsay Anne said…
Yay! Happy birthday!!! <3
anastasia said…
Happy Birthday little Emily! We love you!

Nathan ... what a sweet video!! Thank you soo much for sharing!! Happy Birthday Emily!!
Vierna said…
Emily! You are a big girl now! Three years old! HAPPY BIRTHDAY to one amazing little lady!
We LOVE the video, Nate! Are you singing those silly songs? Watching that smile is truly an inspiration. And seems Annabelle has your wacky personality... LOL
I'm glad you share so much with everyone. Both you and Diana give yourselves a pat in the back! Emily's smile proves just how wonderful you guys are. Oh, yes, God did have a purpose for her... and still does. Give Emily a BIGGGGGGGGGGGG hug from us all!

Viv, Mark & Deedee
Nate said…
Thank you everybody. No, that was not me in any of the songs, but maybe it will be next time. Thanks for the vote of confidence. :) Emily had a great and normal day. She's growing up so much, it's crazy. Can't wait for her party on Sat!! Peace <><
Junior said…
Happy Birthday Emily, the montage was beautiful.
Mary said…
Happy 3rd Birthday Miss Emily! Great video Nate! Looks like everyone had a great time. Give a big hug to the girls for me! Mary